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sclc diagnosis going back to work vs SS disability

Chevy4777
Posts: 22
Joined: Jul 2010

Hi folks. Name is Joe M., 54 years young ::-)..need some input if possible. I was diagnosed with limited stage sclc March this year. After radiation twice a day for 15 days (ended May 19) and 4 rounds of chemo (cisplatin/etoposide) my scans as of Monday 7/12 were clear. I had a 5 cm mass in my right central lobe along with a few lymph nodes on the same side a bit above 1 cm. I have had a dramatic response to treatment. The mass may have been a lymph node potruding into the Bronchus.. My doctor still isn't clear on that one. Go figure. Anyway...that node is now down to 1.2 cm and they are saying it could be due to the radiation, scar tissue etc.. the others are normal below .5 cm.

My doctors recommend a preventative prophylactic cranial irradiation (radiation to the brain)as the next step to increase my chances to beat this, This is part of a study done in the late 90's published in the New England Journal of Medicine.

Anyway..just some background. I am in a quandry. Based on the overall stats, my prognosis does not look good for the long term. I am on Family medical leave at work which is getting ready to expire. (on short term disability now with LTD getting ready to kick in..I applied for Social Security disability after I panicked with the diagnosis, and received a favorable response within 12 days. Evidently small cell is on the auto approval with Social Security.

Should I consider just going on disability in October this year?..I do have a good job and medical benefits. (Aetna) Leaning toward disability due to the aggressive nature of this disease, even though the scans are ok ? Kind of thinking I would like to enjoy life while I can with my wife before the cancer gets the best of me. The other question is does Medicare cover the chemo drugs since prescriptions drugs typically are not covered.

Again thank you in advance.

Regards,

Joe M

I thank you in advance. Any input would be appreciated.

Dapsterd's picture
Dapsterd
Posts: 291
Joined: Jun 2010

Joe...I am in the same quandry...I am 47 with stage 3b nsclc, I panicked and applies one month ago to SS, still waiting, but it is on the impariment list, so should get approved.
I also have Metlife long term through work that will be more difficult I presume to work with...I have sent all paperwork and have talked to them.

my issue, I think it is time for me to relax and do what I really want to do (which I do not know what that is!!) I am an engineer/manager in the big 3 automotive manufacturing business, but have been thinking about being a probation officer or possibly try to get a position at a local hospital in some small capacity.

So I will be waiting to see your replies.

Take care...Dave

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

Joe, just wanted to share what I know about Social Security Disability. When I was first diagnosed with 2 seperate types of cancer in May of 09 I had just lost my job and had no insurance as I could not afford Cobra. As soon as the hospital where I was to be treated found out that I had no insurance their Financial Assistance department contacted me and I met with their Medicaid specialist. She gave me a list of everything I would need copies of and when I got this paperwork to her she filled out all of the forms for me and submitted them electronically to Medicaid and Social Security. I was approved for both within 2 weeks.

When you go on Disability you do not automatically get Medicare, from what I was told you will automatically be switched from Medicaid to Medicare after receiving Disability for two years. Unfortunately I do not know what Medicare covers but I do know that the percentage they pay is not that good and you will still owe money to your doctors. Because of this it is getting harder to find doctors who will accept Medicare patients. My husband is retired and receives Social Security (we do not have supplemental insurance) and he has to pay a portion of the bill for any medical services he receives. The government certainly isn't making it very easy on retired or disabled people. Money is very tight when you are on a fixed income and having to pay for doctors visits and prescriptions is not always doable.

I would definitely contact your local Social Security department before making any decisions as their rules and guidelines are very strict. I do know that you are not allowed to have any money (savings accounts, 401K, etc.) as I had to use what little I had left in my IRA savings account and pay off bills, pay down my mortgage, etc. and show proof that this money was gone and what I spent it on before I could quality.

Good luck to you,
Glenna

Chevy4777
Posts: 22
Joined: Jul 2010

Thanks Dave and Glenna for your input. First let me say you both are in my prayers as all are here.

After the visit with my Medical Oncologist yesterday, the news was absolutely an A+. No mets anywhere, tumor in my right lobe gone except for scar tissue and all lymphs normal. Well one almost normal, from 5cm to 1.8 to 1.2cm which the doc said more than likely scar tissue, which he considers normal. So far, so good.

Now as only we can know, it is a wait and see in 3 month increment between scans ( I am always a nervous wreck) Statistically at best according to my MD., limited SCLC is 25% to 30% cure rate with my regimen. The 30% is with cranial rad to the brain as a preventative course of treatment.

Since this type of cancer is notoriously aggressive, the question becomes whether I go the disability route to spend as much time with the family as possible or do I go back to life as it was pre "C". I have excellent benefits at work, however I have used up my Family Medical Leave of Absence, and if I have to go through second level treatment if it comes back, I will more than likely lose my job.

If I last 2 years or more I can always begin to look for employment. It may be tough though me being in my 50's and having had a cancer diagnosis.

Luckily Glenna, I can do the COBRA for 18 months and more than likely can extend it another 11 months if I leave work due to disability. That would overlap the 24 month waiting for medicare. Hopefully I can get a reasonable supplement to Medicare then w/o worrying about pre-existing conditions with this new health care bill. If I get to that point , I should be doing ok.

Do not know guys. Got to balance the money thing with the Quality of Life while I still can.

With Warm regards to all,

Joe

Glenda N.
Posts: 13
Joined: Jun 2009

Currently AARP is the only supplement that doesn't ask you if you have had cancer. Of course by the time you need it, things may change. I have been very happy with their supplement.

Chevy4777
Posts: 22
Joined: Jul 2010

Thank you for the input Glenda N. That is good to know. Need to join AARP then...Always getting the Mail from them.

Joe

Dapsterd's picture
Dapsterd
Posts: 291
Joined: Jun 2010

Joe...nsclc and sclc, either one makes a person on the SS "impairment list" of approved disabilities...so you should have no prob getting it approved I would suspect. I recommend you apply anyway in case a rare turn for the worse should happen, you will be ready, plus there are some survivorship benefits too.

Not sure on your work situation, but I will tell you, even with this cancer, I have never enjoyed this much time off work(on FMLA till Sept 1st) to spend with my girlfriend,her daughter, my family, etc... this part has been wonderful.

I am not so madly excited about my work as to go back too soon, but I understand the dilema being in late 50's ot 60 trying in a few and trying to get a desirable job may be tough, I will be in that boat as well.

I just got approved for LT Disability from my work, They will pay me 60% of my gross, less what SS will pay for. I am waiting 5 weeks now for SS decision.

Take care
Dave

kelli1843's picture
kelli1843
Posts: 72
Joined: Jan 2010

Glad to see other's have this dilemmma. I was diagnosed January 2010 with SCLC and finished concurrent chemo & radiation in May. Now doing brain radiation as extra precaution even though MRI's and PET came back clear.

I'be been off work since late February, using my accumulated sick and vacation days from work. Was scheduled to go back in September but after review with dr, realizing the possibity of reocurrence, etc., she claimed "unable to return to work".

I cannot go without a paycheck or health insurance. I'm waiting for cancer center social worker to get with me regarding what to do. It's very confusing when reading the SS info, using LT disabilty, etc.

Additional problem: My hubby and I haven't lived together in 6 years and not legally separated or divorced. From what I see, that makes a difference in what benefits I can receive monetarywise.

Talk about stress. I'm only 50 and have 18 years at same employer and NYS ERS retirement system.

Chevy4777
Posts: 22
Joined: Jul 2010

Hi Kelli,

Sorry to see you are in similar circumstances. SCLC is one of the few where SS accelerates the process. I believe SS will look at your previous year tax return, which may have a bearing on how they look at the situation with your husband.

You may want to call Social Security regarding this. You have worked long enough to qualify on your own for SSD. My pamphlet from SS states you would have to pay taxes if you file joint and make over $32K between you and your spouse. (not much)

I applied myself in person with SS after making an appointment. I received an award letter within 10 days. The limited SCLC diagnoses evidently was one that is not expected to improve, however I have something to say about that.

I was approved for LTD and supposedly under that my medical will be paid thru 12/2011. we shall see. I will use COBRA if not.

If you are awarded Social Security Disability benefits, your LTD payments will be affected by the monthly amount awarded.

I went out from work under FMLA using STD benefits after using sick time. I did not have to use Vacation.

Joe

Chevy4777
Posts: 22
Joined: Jul 2010

Forgot to ask Kelli. How you doing with the Cranial Irradiation ? I am due to begin the same at the end of this month.

Warm Regards,

Joe

kelli1843's picture
kelli1843
Posts: 72
Joined: Jan 2010

Hi, Joe. I've only done 5 brain radation treatments so far. I get "zapped" on each side of he head for 2-3 minutes and that is it. The mask is weird though, did you have that done yet?

I am tired a lot but that is left over from the chemo & radiation fatigue, I believe. Those 2 treatments went from beginning of Feb to end of May and took a lot out of me.

Chevy4777
Posts: 22
Joined: Jul 2010

is set up for next week Tuesday the 27th. My Radiation/Chemo Began Last week in April until 7/1 which was my last chemo. I had radiation twice a day for 15 days in the beginning and 4 rounds of 3 day chemo sessions. 1 day of cisplatin/etoposide annd day 2 and 3 etoposide only. Glad that is over with.

I am getting 16 days of rad to the brain as a defense against possible mets.

Fingers crossed,

Joe

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

Chevy,
Here's how the mask looks from the outside ; ) (I had a very nice tech who took pictures and printed them for me)

Chevy4777
Posts: 22
Joined: Jul 2010

Wow Stayingcalm. I am glad it is only a few minute procedure. It beats having markers all over your face and head..:-)

Dapsterd's picture
Dapsterd
Posts: 291
Joined: Jun 2010

Not sure on this on this one...may have to get legally divorced or legally separated for SSD to work. But their website is very informative and the question I am sure has been asked and the answer is probably there.

Dave

nempark
Posts: 683
Joined: Apr 2010

Hi Guys: About SS, disability or any other assistance. Since I had endometrial cancer I am wondering if I would be eligible for any kind of assistance. My Husband is still working, collecting social security and we own two homes and have a bank account and my husband has a 401. I am not working and off course, some additional funds will certainly help since GHI is giving me a hard time with my hospital bills. Have any of you ever heard of this:- I went to a hospital that accepts my insurance but months after surgery I received bills one for almost 6,000 and the other for about 5,600 because the anathesiologist is not on the plan and the pathologist is not. What do ya know!!!
How do I handle this? Thanks for any help. May the Great Almighty God be with all of you and grant you the strength and wisdom to handle your illness. Love to all June

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